My Family

My Family

Thursday, December 27, 2012

Rough Few Days

It has really been a bumpy ride lately.  I don't even know where to start on this one.

I guess I should start with a fellow special needs mom.  She blogs, like may of us do to keep sane and make sense of the world around her.  She is awesome.  I love what she writes and it gives me hope.  Recently she wrote something that made people very upset.  It wasn't a big thing, just a little thing in passing.  But it got very blown out of proportion and as a result she had to shut down her blog.  I wrote to her expressing my support.  I told her that I even once wrote and questioned some choices my old church was making.  It did have some fallout, but I firmly stand by what I wrote.  People don't always like to have mirrors held up to their faces.  The truth can sting.  I hope that she finds the strength to blog again and not let others force their ugly thoughts on her or her family.

Then we celebrated Cary's first Christmas.  I was so excited!   The flu has been working its magic in VA and some of my family was recovering from it.  Cary's BPD doctor was very nervous about flu season as the shot has not protected like they thought it would.  I was given strict instructions on keeping her away from places, things, and people.  To make a long story short even though my family was well on the mend Cary was not allowed to be around them for Christmas.  Cary and I stayed home while Shannon and Marvin went and had a nice family dinner and presents.  I think I cried most of the day.  I felt so mad and cheated.  Cary, on the other hand, could have cared less and played with her new bumpy ball and dancing piggy all day.  It was good that at least one of us felt festive.  I did finally pull it together.  Thanks to some caring friends calling in and a big slice of apple pie and reflection on what the day is really about I ended up enjoying time with my daughter.  Plus my rocking mother in law sent home a ton of goodies!

Yesterday we went to MCV for an EEG.  I had scheduled that and a neurology appointment all in one day.  After dropping off Marvin and Paw paws house and picking up my friend Heidi, we were off.  Cary was treated to a facial scrub and then had so many wires hooked up to her she could have been the bride of Frankenstein.  Cary slept through the whole thing.  Thank heavens.  We were in there for about five minutes when the nurse excused herself.  Heidi told me that that usually is not a good thing.  She came back and was happy to hear that we saw the doctor the same day.  So then I started to worry.  Heidi told me that it probably was a little thing.  So I relaxed some and we had lunch and went to the doctor.

It turns out it wasn't so little.  Dr. A told us that they expected Cary to have abnormal brain scans.  She had massive brain bleeds at birth and hydrocephalus.  What they didn't expect was so much abnormalities.  Cary is having many preseizural brain waves.  Lots of them.  So many that we have to go back in a few weeks for a 24 hour EEG.  Then she will go on medicine.  I knew that she may have to do this, but she is so young and little.  I was hoping to wait until she was 3 or 7 or 12.  I felt like I had been hit by a ton of bricks.  Again.  We also discussed her ability to walk and talk due to all of her brain damage.  Dr. A was hopeful that she would be able to do some things but also realistic on the situation at hand.  Again, feeling like I was being hit by bricks.  It was hard.  I like Dr. A.  She is awesome.  But my daughter is my world.  And it is hard to hear about limitations and brain malfunctions.  She will also soon bear a new label.  When she is 2 she will be classified as having Cerebral Palsy.  So after dropping Heidi off I cried all the way home.  Cary probably thinks mommy is some sort of basket case at this point, because she was conveniently ignoring me.

So I cried, mourned, and raged against it all.  Then I did some digging.  CP is not a death sentence.  It is brain damage, which Cary has.  It also is more common in boys.  Everything I have put my hands on so far and read boils down to the same thing.  It doesn't get worse.  It simply is.  Also, the more a person can do for themselves, the better life they had.  Aggressive therapies and early interventions are the key.  So me sitting around and crying is not going to do a fat lot of good.  Yes, it releases emotions, but it does not help my child.  So what happens next?  We step up her therapy.  It is important for me to get vision to show up and be on board on this.  Shannon is also pitching in more and not treating her like she is glass.  I have also been working on getting a Montessori curriculum together for Cary.  By immersing her in a language rich environment with a heavy focus on Sensorial as well as simple Practical Life skills I am on my way to giving my daughter the education she is entitled to.  After all, I am a teacher.  The stakes are so much higher this time around though.  Every gain Cary can make is a step forward to a better life for her.

So I will continue to fight, speak out, and bring out the best in my daughter.  She is amazing, funny, and my little hero.  Together we can conquer the world!

Thursday, December 20, 2012

We're still here!

Really, I haven't gone that far.  I was all ready to post last Friday the glowing reports from the Virginia Institute of the Blind and Deaf.  I was ready to laugh over how much fun I had with my mother in law shopping and just having fun.

Then I got home and heard about CT and it just didn't seem right to have a really happy post.  So I took some time off and grieved with the families.  Then my son got sick, and my husband got the flu. I got some crud.  Cary has remained healthy so far.  I am thankful  I hope she stays well.

So first things first.  Cary's vision therapist managed to get out of coming once again.  I was ticked off heading down to the Virginia Institute of the Blind and Deaf.  I was greeted warmly, they listened to my concerns and began basic testing.  After a good three hours of testing the beginning results are encouraging.  Cary can hear sounds.  That is the good news.  The bad news is that she needs an ABR. This will test her ability to understand what she hears.   Often cortical blindness and cortical deafness goes hand and hand.  We go back the 11th of January.  It will be two or three more visits before any "real" results can be given, but so far things are looking good.  It was nice to hear positive results.  Plus I fell in love with the school.  It was my dream school for Cary.  But Staunton is over an hour away.  Sigh.  Time will have to tell.

So after Marvin was sick Sunday-Tuesday he was able to return.  I was glad.  It was his Christmas week.  He had a whole week of testing before so the poor kid needed some fun.  I will have to say, I love classroom parties.  I have worked at school that have allowed them and schools that don't.  I will also have to say in my humble opinion  that kids who are allowed to have time to celebrate have an outlet for all that extra holiday energy instead of having to bottle it up and pretend it is not there.  This has been so helpful for Marvin.  And mama:).  But that is just me.  I also got some photos of the kids.  Marvin insisted that Cary Lynn come along and I was happy to bring her.

Marvin playing musical chairs.  Interesting to note that musical chairs is not a commonly played game any more.  

Marvin decorated a gingerbread house.  He had a blast making and eating it!  

Cary was also allowed to partake in the icing portion of the fun (yes, I know that it is not the best choice for her to eat, but the squeals and smiles made it all worth while).  

So all in all it has been a very awesome start to Christmas despite illness.  As we get closer to Christmas I am excited to celebrate with my little ones and look forward to the fun and joy of this holiday season!  

Merry Christmas everyone!! 

Friday, December 7, 2012

Beginning to see the light

It has been super busy around here (translation:  I would kill for a dull day).  Christmas has exploded around our home.  The tree, lights, and various decoration.

For a child with visual impairments, I often wonder what Cary sees.  I put up the tree and lights and held her up to it.  She turned away and cried.  Not good.  She has accepted the tree since then and seems to enjoy the jingle bells I have placed around her play areas.

Marvin, on the other hand, loves it all!  He enjoys "helping" me with the decorations and generally getting in the way.  But he is so enthusiastic about it all.  It is hard to stay mad at him.

It has also been a rather frustrating couple of weeks in the vision department.  I won services for Cary weekly.  I felt that this was and is what she needs.  Vision therapy connects her to her world.  I thought that I would have weekly services until she turns three.  Oh boy, was I wrong.  According to her vision therapist we are "trying out" this for a month.  In other words, she does not want to make the trek out here weekly.  She is a great person, but complains about coming out and insists that I am doing "just fine".  It is like the proverbial adult patting a child on the head and telling them to scoot along.  Plus, she "double booked" this week and "was unable to fit me in her schedule this week".  Plus there is Christmas break coming up and she "won't be available."

So I took some deep breaths, hung up the phone with her, and proceeded to have a mega screaming fit.  Luckily, Cary was asleep in her room with the door closed.  After I yelled and and raged I began to think about what I could do to help Cary.  After all, yelling is NOT going to help her vision and really doesn't do much except wreck my vocal chords.  So then I thought.  I channeled my old boss and remembered our parent ed night on executive functioning.  I remembered her and my co-teacher asking what we wanted our children to be in the future.

So I made a list.  I visualized Cary through the years and my goals, hopes, and dreams for her.  My biggest hope, dream, and goals all align with her sight.  So then I went to step two.  If my vision person isn't willing to hear me out and support us what do I need to do next.  I began digging through all of notes and lists I had.  I ran across the Virginia Institute of the Deaf and Blind.  Long ago I had e-mailed them but had never heard back from them.  They have programs for families with blind children.  I picked up the phone, said a quick prayer, and called.

They answered!  I talked with a wonderful woman who actually listened to me and heard what I had to say.  I get to go to Stanton, VA next week and there they will give Cary a hearing screening.  What you say?  Hearing?  Yes.  Cary apparently flunked her newborn hearing test and there never was a follow up given.  Well there was supposed to be, but the previous foster parent never took her.  Surprise, surprise.  So anyway, to get evaluated for the program I am going in for the hearing screening.  Then I will get vision support as well.  Sometimes the big changes come about with small steps.  But they have to be on the right path.  I feel like I am starting to find that path.

I will go.  I will tour the school, the pre-school, and meet the people who are willing to help me help my child.  They did tell me to let my social worker and Infant Toddler know as a courtesy.  I told the social worker and she said go for it.  Infant Toddler never returns my messages so I left them one and frankly, don't expect to hear from them any time soon.  I will also inform Cary's therapy team that we are doing this.  I know speech and PT will be for it.  I am sure vision will not be pleased, but I really don't care right now.  My priority is my daughter.  Not vision's feelings on the matter.  My children are going to get what they need.  It is their right.  I will be my daughter's voice until she is able to be her own voice.  One of the greatest gifts I can give my children is the power to advocate for their needs. My children are survivors and strong.  I am blessed to be their mama.